Type 1 and Giving Up.

[ClassOf2020]

I've been diagnosed with Type 1 longer then I can remember, I don't remember a day when I didn't have to take insulin and I don't know how to cope any longer.

I've completely given up on finger pricking for the past month (although I still take insulin) because I can't deal with the pain any longer. I've completed BERTIE and even though I know the consequences of not measuring my glucose levels, I can't bring myself to do so.

Back when I still had hope, I spoke to my GP about the possibility of a Freestyle Libre as an alternative to finger pricking, but it turns out in my area I wouldn't be eligible and I don't have the budget to be able to self-fund.

 

[Pumper_Sue]

Hello and welcome to the forum. It sounds to me as if you have burnout
You need to ask for a referral to a hospital clinic if you are not under one for starters, where hopefully they can help you out.
Why are your finger pokes painful? Are you setting the poker at the lowest setting and poking the side of your finger? Have you tried doing a finger poke with just the lancet? This might be easier for you.
If you drive your licence is invalid for not testing so you need to sort this out if it's the case.

Is what I did and do, is do the blood test but not write them down. This way I feel as if I have stuck two fingers up at my diabetes, obviously I act on the result so I lead a normal life and stay well.

 

[SB2015]

Sorry to read about the difficulties you are experiencing with your Diabetes at present. It is good to read that you are still giving yourself insulin even if you are not checking.

As Sue has said the finger pricking shouldn’t be so painful. I often forget to change my lancet and I am surprised at how much better it is with a new one (I know I should have learnt that by now). It certainly hurts a lot more in the centre of the finger, so I use the paddy sides of finger. I also sometime use the base of my thumb. The finger pricked has sometimes accidentally get t moved to a higher level of insertion. Just check that yours is turned down to the lowest needed to get blood out.

One of the criteria for being given the Libre is that you test 8 times a day. This could be a motivation to return to testing and can easily be clocked up with pre-meal, pre-driving, and before bed can clock up five or six in a day. Worth it if it leads to getting the Libre.

It is not uncommon for people to experience Diabetes Burnout after some time. I did after a while. I asked for help and got this and managed to get back on track. Just ask and don’t think you need to deal with this on your own.

 

[Bruce Stephens]

Is what I did and do, is do the blood test but not write them down.

I never found writing down results much fun either. That's one of the (to me) significant benefits of the Libre: my phone scans it and sends the results to LibreView where the diabetes team can (but generally don't without talking to me first) see them.

I'm a bit surprised your GP claimed you wouldn't qualify. I think they're mistaken. You seem at least plausibly to qualify under this one (from https://www.diabetes.org.uk/guide-t...our-diabetes/testing/flash-glucose-monitoring):

• You work somewhere that your diabetes team have said isn’t appropriate for finger-pricking. Or there are emotional or social factors that mean you can’t prick your finger. Both of these cases mean you can have a six-month trial of Flash.

So I think it could just be that your GP is mistaken. Regardless, get yourself referred and talk to the people who can make the decision. Even if the answer's not the Libre, it's obvious you need more help than you're getting, so make sure everyone you see understands that.

 

[Inka]

Hi @ClassOf2020 It definitely sounds like burnout. It’s a horrible thing. Sometimes the relentless pressure of Type 1 just gets unbearable.

You mention the finger pricks as a big thing. What pricker do you use? What lancets? Although it sounds like trivia, having the right stuff can make a huge difference. Are you also worried about seeing high numbers when you test? Please don’t be. The numbers aren’t for your GP or the nurse - they’re for you. They’re ammunition for you to use in the fight against the b***** diabetes.

Feel free to vent all you like here. We understand. X

 

[ClassOf2020]

Thanks for the advice and kind words everyone, it means a lot.

I'm currently (not) using Accu-Chek FastClix lancets in combination with a CareSense Dual, I tried using a CareLance but that ended up being much worse.

The lowest setting I could reliably draw enough blood on was 3.5 (out of 5.5), I tend to use the sides of my fingers over anything else. I find it significantly less painful to inject insulin then to finger prick, which is the main reason I still take insulin.

I don't have a car so luckily I don't need to worry about being a driving hazard.

How do you all stay hopeful when it seems like things can only get worse?

 

[Kaylz]

How do you all stay hopeful when it seems like things can only get worse?

I see it as I've had enough problems (eyes) with good control so couldn't face the consequences that may come with not checking and taking care of my levels xx

 

[rebrascora]

Hi and welcome from me too.

"How do you all stay hopeful when it seems like things can only get worse?"

Being a member of this forum certainly helps.... having regular contact with other people who have to undergo the same rigmarole day after day and reading about their successes and sharing in them as well as receiving support when we are struggling. I am only 18 months into my diagnosis but doubt I would still be sane if it wasn't for the advice and support I receive here.

Have you had a DAFNE (Dose Adjustment For Normal Eating) course or whatever your local equivalent is? That can help you to refocus and more importantly make contact in person with other Type 1 diabetics. The DSNs and dieticians who run it also have quite a bit of clout with consultants and reps, so it might be a back door way of getting Libre as well as helping you through your burnout. Unfortunately they are not running at the moment but getting your name down to go on one is a good step forward.

Hang in there, it will get better.

 

[ClassOf2020]

Have you had a DAFNE (Dose Adjustment For Normal Eating) course or whatever your local equivalent is?

I was originally scheduled to do a DAFNE course but it ended up being cancelled due to Coronavirus, BERTIE was recommended as a substitute.

I see it as I've had enough problems (eyes) with good control so couldn't face the consequences that may come with not checking and taking care of my levels xx

That's an interesting way of looking at it, I personally find it incredibly demotivating knowing that even with good control major problems still occur.

I don't wish to be a downer, but I've been told things will get better for years now, and it just isn't true in my experience.

 

[Pumper_Sue]

all stay hopeful when it seems like things can only get worse?

In my case I hate feeling unwell hence why I tend to look after my self.

What is happening to you is a normal process as you progress through your diabetes journey (burnout) We all go through it at some point but you will come through it. Even if you think you wont you will 🙂 (((((((((((((hugs))))))))))))))

Take one step at a time, perhaps setting a goal of at least one test a day for a couple of weeks. If you set to high a goal and don't succeed it then leads to the defeated feeling again. So be realistic in your goals.

Do ask for help though, remembering that the Drs and nurses have seen it all before so you wont be judged.

 

[Kaylz]

That's an interesting way of looking at it, I personally find it incredibly demotivating knowing that even with good control major problems still occur.

I don't wish to be a downer, but I've been told things will get better for years now, and it just isn't true in my experience.

Trust me after diabetic macular oedema less than a month into my Type 1 journey and proliferative retinopathy less than 2 years in I get angry when I see people that's neglecting their condition and getting off with not having any problems as I just see it as not very fair but then I think they will end up with worse problems in time than me if I take proper care of it xx

 

[Pumper_Sue]

That's an interesting way of looking at it, I personally find it incredibly demotivating knowing that even with good control major problems still occur.

I don't wish to be a downer, but I've been told things will get better for years now, and it just isn't true in my experience.

But then on the other hand many people have no complications from their diabetes.
More often than not you only hear about the bad side (complications)
55 years for me with type 1 and no complications. I've done as I wanted throughout life and refused to let diabetes get in the way. Yes it's been very hard work at times and very frustrating. I've slowed up a bit now due to having MS but hey I'm working round my limitations and still enjoying life.

 

[everydayupsanddowns]

Hello @ClassOf2020

Welcome to the forum.

Burnout is a swine. And diabetes can be relentless, exhausting and draining - with no ‘time off for good behaviour’.

The link between mental health challenges and long term conditions is also well established, and of course if you are experiencing anything from low mood to full-on clinical depression (which sounds much more like what you are describing) then the kind of continual self-care that insulin therapy demands is all the more of a challenge.

Even small everyday things can become ‘impossible tasks’.

It sounds like you need some proper help and support from a diabetes-trained psychologist and a hospital-based diabetes clinic.

And I completely agree that you should be able to access Libre with a more supportive Dr interpreting the mandatory NHS England guidance.

Hang in there dude. You are taking your insulin - that‘s good. Plus it’s clear that you WANT to be able to do this, AND know that it is important - but are just finding it really tough right now. All those things are really important— and mean you are almost all the way there.

Could you agree with yourself to check BG once a day - perhaps before breakfast. Just to keep yourself safe?

 

[Inka]

I personally find it incredibly demotivating knowing that even with good control major problems still occur.

Well yes, nothing is guaranteed, but good control reduces your chances of getting complications longterm. So it’s worth the effort IMO. More than that, staying in range makes you feel better day to day as @Pumper_Sue said. Not just physically better, but emotionally and mentally more settled too.

I deal with the worries about the future by reminding myself that nobody knows what the future holds, whether they have diabetes or not. If you take that worry to the extreme of thinking, people would be permanently miserable thinking about the hundreds of diseases and potential accidents out there that might happen. You can’t dwell on that.

One of my favourite sayings is: Don’t Let Worry about Tomorrow Steal Today’s Joy

It’s so easy to catastrophise and focus on all the things that could go wrong - especially when you have a medical condition that highlights some of those things. It makes you think about things you might not have thought about if you didn’t have diabetes, and think about them at a much younger age. But diabetes is one thing we can control - not totally, no, but we can give it a really good go. Moreover, we’re so much closer to better tech ways to deal with our condition and closer every day to a cure. We just have to hang in there and keep ourselves as healthy as we can while we’re waiting.

 

[trophywench]

Here's a thought. Have you tried soaking your hand in a bowl or basin, or even just one finger, in a mug, of nice hot water until your skin has gone all crinkly, before testing AND are you using a new lancet every single time AND if blood doesn't appear very soon, then stroking that finger on the same side as the hole you just bodged from well below the top knuckle to the top of the top knuckle?

How often do you give the ends of your fingers on both hands, a good scrub with a soapy nailbrush - it all helps, honest. I've never in my life done that much physical or mucky work, but earlier this year I noted I was having to turning my own Fastclix up another notch fairly frequently and getting more than a bit hacked off about testing myself cos yes, it hurt cos I was getting hard skin when I had to give myself a talking to, tell myself what a daft old bat I was, and start paying a bit more attention to taking care of ME.

Oh - and start costing the NHS a bit more than you probably do right now by doing what we're all supposed to do but most of us old hands don't - start changing your lancet every time you use it. It really IS possible (sometimes it seems) to change habits of a lifetime!

 

[pm133]

I've been diagnosed with Type 1 longer then I can remember, I don't remember a day when I didn't have to take insulin and I don't know how to cope any longer.

I've completely given up on finger pricking for the past month (although I still take insulin) because I can't deal with the pain any longer. I've completed BERTIE and even though I know the consequences of not measuring my glucose levels, I can't bring myself to do so.

Back when I still had hope, I spoke to my GP about the possibility of a Freestyle Libre as an alternative to finger pricking, but it turns out in my area I wouldn't be eligible and I don't have the budget to be able to self-fund.

You say you've not tested for a month or so.
Would you be able to cope with testing once a week and then take it from there?
That way you are not completely flying blind but you are not overwhelming yourself either.
I can understand your comment about pain. I've only been doing this for a few weeks and already I'm down to 3 good fingers with several bruises.

 

[everydayupsanddowns]

How are you doing today @ClassOf2020 ?

You might find it helpful to chat through the issues you are facing with the Diabetes UK helpline team (you can call 0345 123 2399 Mon-Fri during office hours, or email helpline@diabetes.org.uk) They will be happy to offer additional support, or just a listening and supportive ear without judgement. Please do drop them a line. I’m sure they would be able to help you.

If things are getting too much and your low mood continues, please also reach out to the Samaritans (call free on 116 123) or Mind (https://www.mind.org.uk/)

Diabetes burnout is really tough, and you don’t have to go through it alone.

Wishing you all the best.

 

[cameron]

Do you have contact with a diabetes team?

I have good support from my GP, but my diabetes team at the hospital are better at adjusting my care when I'm going through a rough patch. My endo prescribed me the Libre for example.

 

[Thebearcametoo]

Everyone has different pain levels. Basics for finger pricking are to be warm if you can be and well hydrated. Prick the side of the finger as you have been doing as there are fewer nerve endings there. Use a fresh lancet every time.
Some finger pricking is better than none. So if you can’t do it every meal at the moment how about once a day? First thing in the morning would be ideal but that can be a time when you’re less hydrated so pick when suits you. You can get Emla cream at the pharmacy which is a local anaesthetic. It takes 10-15 minutes to work so smear a little bit on then wait. You can then wash your hand before finger pricking if you need to. If rewards work for you then you might find a star chart with a prize for every 10 stars helps motivate you. Have someone else in the household help you if you’re able. Manage of chronic illness is hard work. You’re doing well keeping up the insulin but without knowing your glucose levels that’s a bit like Russian Roulette.
We’re here to cheer you on!

 

[SB2015]

don't wish to be a downer, but I've been told things will get better for years now, and it just isn't true in my experience

The Diabetes won’t go away, and our ability to cope with the pressures that it puts on us varies.
You recognise that it is essential to take the insulin. That is good.

Our understanding of the condition can improve over time, as does the equipment available to help us with the practicalities. I think many of us experience a bit of a roller coaster as it places a lot of pressure on us.

About three years ago I went through what you are. I asked for help and then worked with a counsellor and came out the other side. I still see the counsellor once a month and will continue to do so. We are worth it. I had a lot of help from others on here, and I found it helpful to have a good rant at times. They listened and understood.

Keep in contact .